Chapter 28:   Back to the PICU   
 Starting 2nd Grade                                                   September  2006

 The first day of school; 2nd grade for Rose and 9th grade for Katie at our High School for the first time.  And Erin is off at college. When did that happen?

Kate and Rose with the traditional front step picture

 Rose with her Uncle Joe and 

Cousins Jim and Tom at the bus stop

 

The Place You Don't Want to Be ... But Need To Be               October 2006          

The phone rang, jarring us from a sudden deep sleep.  Cheryl and I were laying fully clothed our arms wrapped around each other on a twin bed in a small dark windowless cell block of a room.  I stumbled off the bed and tried to locate the source of the ringing, only light a thin rectangle outlined the lone door.  I reached the one table and felt blindly, unlocking key and glasses and wallets to places unknown.  The phone rang again and this time I found it.

“Hello?”

“Hi, this is Jennifer, your nurse.  Dr. Lapek wants to see you in the family waiting room.”

“When?”

“Now”

 “Which waiting room?  The one just outside the PICU?”

“Yes.”

 “Ok. Did he say anything else?”

“No, he just said he wanted to talk to Mom and Dad.”

“Ok, thanks, we’ll be there in a minute” I hung up the phone.

“What did they say?” Cheryl asked.

“Not much. That was Jennifer, Rose’s nurse.  Dr. Lapek wants to see us now in the family waiting room.”

I flipped the light switch and the overhead fluorescents gave the room a timeless hue.  No up, no down, no sense of where we were.  I glanced at my watch.  It was Wednesday 3:00 in the afternoon.  We were both exhausted; Cheryl pushed her hair back, put on her glasses and searched the floor for her shoes.  I did the same and then we were both out the door and making our way through now unfamiliar linoleum hallways.  We’d only been awake for 30 seconds and we’re just trying to orient ourselves.  Was there a sense of urgency to the call or were we still off balance?  What did Dr. Lapek want to tell us?  Last we knew, he had been in the OR with Rose.  How could we have fallen asleep?  And how could we have ended up back here again?

 

It wasn’t obvious at first but our world started to tip out of control three days earlier on Sunday night when Rose threw up just after going to bed.  It ended up being a long night, the attacks continued every hour or so until dawn.  Calm and resourceful as ever, sometimes Rose managed to hit the bucket, sometimes not, sheets were changed; clean pajamas were found until the crisis seemed to pass with the coming morning. 

Rose was exhausted.  She stayed home from school and spent the day sleeping.in, taking naps on the family room couch, cuddling with mom.  Her appetite came back a little bit but not much.  Rose finished the day almost as tired as she had started it. 

When Rose fell asleep Monday evening, for hopefully a restful night’s sleep, Cheryl and I had another in our ongoing, series of parent conferences.  It didn’t seem like Rose had made enough of a recovery to be ready to go back to school on Tuesday.  Her bursts of energy had been few and far between and, a few sips of juice and a couple of bites of crackers were all she had managed.  In fact, her lack of substantial progress was enough to scare up ghosts of past illnesses that had dragged her down.  Before we went to sleep, we agreed that if Rose did not start to rebound on Tuesday we would call Dr. Li, her primary care physician. 

The next morning Rose she no evidence of getting her energy back; for long stretches she napped on the family room couch with her head rested on Cheryl’s lap.  As the morning slid slowly by Cheryl noticed that the arteries in Rose’s neck were visibly pulsing at a very high rate, too high.  She quietly found her old nursing stethoscope and listened to Rose’s heart; a racing heart. Cheryl laid two fingers across the inside of Rose’s wrist and counted her pulse or tried to.  It was over 150 beats per minute, faster than she could clearly count.  Thoughts formed in Cheryl’s mind that she didn’t want to connect.  Later that morning she called me at work.

“Rose still isn’t feeling well.” She said, “I checked her pulses, its fast, it’s over 150 beats and just staying there.”

“Oh, man.”  The number 164 jumped into my mind.  Green numbers on a hospital monitor, unchanged for hours, for days, reading a constant 164 beats per minute, the pace of her heart’s ventricles, her atriums were racing along at twice that speed, and almost impossible to comprehend 328 beats per minute.  Her atrial flutter was back.

“We should call Dr. Li.”

“I already did.”

And from there we connected the dots like the experienced family we now were.  Unlike 3 years ago when Rose’s atrial flutter had been a tough case to diagnose, this time we followed the path from our family-room couch, to Dr. L’s office, to the ER, and finally the PICU like we were playing out our destiny.  No prolonged poking and prodding, no delays, with Rose’s history and our constant reminders the diagnosis was quickly made.  We arrived in the PICU Tuesday afternoon only mildly pained by the initial assault of the IV in the back of her right hand.  The fluids were bringing some energy back. Her independence and sense of humor were both intact as she played card and board games with us, and as-needed maneuvered her IV pole, with some help, to the amazing toilet that popped our the end of the counter in the corner of her room, and generally won over the nurses and doctors with her spirit and her sense of humor.

Dr. Silverstein, the PICU intensivist, laid out the strategy for the initial low-stress attack on her atrial flutter; “OK Rose we just need you to hang out, take some fluids, take your medicine, get a good night’s sleep and we’ll see if you get all better, Deal?”

Rose shot back, “No deal!” And so it went, back and forth, every ‘deal’ met with a ‘no deal’ for maximum humor impact.  The rest of Tuesday and into Wednesday morning Rose shone like a child we are so proud of, despite the discomfort and inconvenience of hanging out in bed almost full time and dragging an IV pole on her brief tours of the PICU hallway, she was fully herself for all to see.

 

A night passed and the morning came but the soft approach of medication and rest did not cure her atrial flutter.  We spoke with Dr. Lapek, the cardiologist, about the next step.  Like the next dot to be connected we were fully expecting another cardio-version in the PICU, just like three years earlier, a quick shock to her heart and two heart beats later she’d have her rhythm and her life all back.  “Un, no, because this has re-occurred and because we don’t know for sure how long she’s been in flutter, we should take a look at her valves to make sure there’s no clots before we ‘avert’ her.  To see that we need to put a wand down her esophagus to see her valves.  Rose needs to be sedated in the OR for that.  It would be safest there.”

Control of our lives was starting to slip away.

“She’s not going to need to be intubated for this, is she?”

“Yes, she will.” Dr. Lapek shared our apprehension to expose Rose to more bodily invasions but he was still the doctor.  “Rose will be under general anesthesia so she’ll need to be.  But it won’t be for long.  We’ll try to get her off the vent as soon as possible.”

The dots weren’t so clear.  The next step wasn’t so confident.  The ever forward, certain unfolding of our lives was starting to scatter like plans that we had no right to think were ours.

An hour later we were walking alongside Rose as her bed was rolled down the hallway, out the PICU and towards the OR doors.  We tried to act confident as we continued to explain to Rose, “Ok, you just have to go to the OR for a few minutes to fix your heart” …”This is what you need to get better” …  “Do this and then we can think about going home.”  We were playing the confidence game right up to the moment Rose left us behind and we watched her roll through the OR doors.  We choose bad acting over blunt realism out of ignorance.  Bad acting was all that was left of our tattered hopes. 

We returned to our PICU- parental overnight room and slept the unconscious sleep of emotional exhausted.  We were raw and in need of comfort and recovery ourselves.

 

And then the phone rang, and we stumbled down the hall to sit on that same couch in that same PICU waiting room waiting for news of Rose: where we sat with our families, more than twenty of us as we waited for news of Rose’s impossible survival as a 3 months old.  Where we sat, just Cheryl and I when Rose was 4 years-old, hugging and crying, to be surprised by Dr. Iyer with the news that the cardiac-aversion had worked just as he had planned.  And now we sat again, too tired and scared to be any more than emotionally empty, we didn’t know what we were waiting for.

Dr. Lapek came in, pulled a chair up and sat close, right in front of us

“Well, Rose, is fine but I think she’s taken ten years off of my life.”

He was young but he looked very old.  We said nothing.

“The cardio-version went fine….but there were some complications before that….but she’s ok now.”  He was trying to reassure us, grateful he had the truth to reassure us with, but still shaken by the possibility of what could have gone wrong.

“What happened?”

“I’m not sure, her heart slowed way down for about a minute, either due to the anesthesia or maybe a vegal nerve response due to the ultra sound wand going down her esophagus…,” he gave a disarming shrug, “We’ll probably never know what caused it…it was only for a minute…she seemed to respond pretty well to the meds…it’s just that minute seemed to last forever….”

Cheryl and I said nothing, just sat quietly stunned.  We had fooled ourselves into thinking we were beyond the reach of this kind of medical crisis.  The false armor of hope takes a moment to be blown away, leaving the raw skin of every threatening moment we’ve ever experienced.

Dr. Lapek went on, “There were no blood clots on her valves.  Once we got her back and stabilized we were able to do everything we needed to do.  The cardio-version went fine.  They’re finishing up with her now.  She should be back to her room soon.”

“Is she still intubated?”

“Yeah.”

“Can that come out soon?”

He shook his head ‘no’, like he didn’t want to say it but had to, the friend-side of him in conflict with the doctor-side.

“Probably not.  I think everyone’s going to be a little cautious for a while.  They might want to keep her intubated overnight.  I’ll let Dr. Silverstein decide that.  Let’s see how it goes the rest of today first.”

The last thread of control was severed.  Now we were just falling, to where we didn’t know, trying to endure whatever came our way with our bad actors show of hope and resilience.  About an hour later, Cheryl and I were waiting in Rose’s PICU room when we caught sight of a small procession making its slow but steady way down the hall towards us; a bed surrounded by a crew of strange faces, a large bed with our tiny Rose, lonely and pale in the middle of white sheets, the intubating tube down her mouth, her face partially hidden by the securing tape, a safety line for a life line, and more tubes to and from different bags and machines snaked across her bed.  The monitor traveled at the head of her bed, success was defined by the green line tracing the rhythm of her heart, and the number told the story, dancing around one hundred beats per minute, the atrial flutter lock on 164 beats per minute was broken. 

As the nurses, transitioned Rose’s bed from an OR mobile platform to a bed in the PICU, Cheryl and I worked our way to Rose’s bedside as soon as we could without getting in the way of any medical preparations.  The first touch of here skin is a small but infinite comfort.  It’s not the sound of her voice telling us a joke about her school day, it’s not the sight of her running down a soccer field; it’s just a touch of her living skin.  Here in the PICU, right now, we are so precariously raw, we dare only the most basic of expectations, a touch of her living skin.  We touch her, kiss her cheek, hold her hand, and start again, ever so slowly and tentatively, to rebuild our lives.  We offer a few words hoping she can hear us through the unconscious snow of anesthesia.  Do we bring comfort?  Doubt is the air we breath. 

“Its okay, Rose, you’re doing good…take it easy, everything’s going to be alright.”  I repeat the words over and over again.  Like a prayer hoping to share my life energy with her.  The voice is mine and someone else’s at the same time.  Then, in my memory, I hear Rose’s voice, too.  The very same words; the same tone of comfort she has spoken to me when she’s found me trying to catch a moments rest on the couch at home.  The realization erases any doubt that she remembers her dark passages as I remember her brushing my forehead and reciting the same comforting mantra, “It’s okay…everything’s going to be alright.”  She remembers with her whole body and she’s learned the value of comfort.  Not the stereo-typical loving words of Down syndrome but the words of a survivor that’s been down dark roads that most people ten times her age wouldn’t begin to understand.  Does she remember from when she was born, struggling to breath on her own, from the prolonged three week ordeal of her open heart surgery at almost 4 months old, from the last atrial flutter episode three years ago?  It doesn’t matter from when.  She remembers and she remembers comfort and she’s learned how to comfort.  And so again we feed the circle, hoping to comfort Rose, hoping to nurture her recovery and hoping we, can, in maybe just a small way, find a way to bring something positive to Rose out of all this suffering. 

 

Cheryl and I spend Wednesday evening through Thursday morning comforting a nearly-silent and almost always unconscious Rose.  A parent’s reward of a child’s speedy recovery is the many questions you never have to ask yourself.  A slow recovery or worse brings questions that can only tear you apart.  Given your child, laying in front of you, hour after hour, nearly motionless, unresponsive, her vital life supported by a breathing tube and a half dozen another lines, pumping-whirs and warning-beeps are her only words, the vitals-monitor-display is her blank stare.  When did we last talk?  Day dreams become night mares.  Thoughts of injuries not recovered from, thoughts of a life cut short, thoughts of a church packed with more people crying in one place than you ever thought possible, thoughts of a eulogy no parent should ever have to give, and thoughts of a rich life full of possibilities that we will never be realized.  She’s gone and yet she’s here.  Our lives collapse down to this single moment.  There’s no sense to any other relationships.  We are only in this, just our family.  No one else could understand.  The past and the future are distant and irrelevant; daily routines, school schedules, vacation plans, work worries, ever the seasons of the year and the time of day are something we no longer belong to.  We are just here, now.

 

She arouses just the slightest, her eyes open for a moment, she’s exhausted, she’s drugged and she’s confused and scarred.  And she hangs in the twilight.  Dr. Silverstien motions for Cheryl to join him in the hallway.  They talk for five minutes and then Cheryl joins me at Rose’s bedside. 

“He wanted to do a CAT scan”

“Why?”

“He thinks she’s taking to long to wake… maybe she had a stroke.”

I didn’t say anything.

“I said I didn’t think so.  She’s just groggy from all the medication she just needs some time to get it out of her system.  Moving her to get a CAT scan will do more harm than good.”

And a few hours later Rose proved her mom right.  She awoke enough to fully sense the intrusion of an intubation tube down her throat.  She wasn’t interested in our weak words of explanation.  She focused on regaining control of her breathing, fighting the steady rhythm of the vented air forced down her throat and into her lungs, she gathered herself and then started coughing. 

The nurse by her bedside leaned over her, “That’s it…. she’s coughing the tube out.”  The nurse worked quickly to peal the tape that secured the tube to Rose’s face, once a safety line, now a danger.  First she had a hand full of balled up white tape, next she pulled an impossibly long plastic tube out of Rose’s mouth.  Rose settled and drew a few breaths. 

“I guess she was ready.”  The nurse said.

Rose had reclaimed her own breath and her own voice, as weak as she was but she was still tied to the bed by an IV in each arm instead with the help of our parental coaching, a blood pressure line inserted up her femoral artery, a central line in her right groin and a foley catheter inserted into her urethra.  The medical need to claim immediate access to Rose’s critical biological functions had the unwanted side effect of pinning her to her hospital bed like a butterfly against a board; all needles, every arm and leg and even where she pees.  This has to be too much for any young child to comprehend, seemingly well-meaning adults, even the her own parents, are trying to be convincing in a sweet trusting voice, ‘Take another needle’, ‘Live with lines stuck one, two, or three or even four inches up into your tiny limbs.’ Adults say ‘Trust me, you need this.  It will help you get better.’  How can this make sense to any young child?  Do you feel the pain through the snow of medication?  Just because you can’t tell us do you still feel these intrusions, needles through every limb?  Medicine can do so much good, even giving the gift of life beyond a year or two for many children like Rose born with an Endocardial Cushion heart detect.  But still, much of the wonder of medicine is only made possible by the barbarism of butchery that cuts through bodies.  In these terrible childhood moments, I see the seeds of memories that could grow into the horror stories recollected by an adult. 

Too much introspection is the side affect of too many trips to the PICU.  Our worst fears did not come to pass, Rose climbed back to health, exerting what strength she could, A tiny 40 lbs, 8 year old lost in a large bed, in a room full of strange equipment and unknown faces, some where in a large hospital, not knowing which way the path home is except by the faces of her mom and dad.

 

Soon after she pushed our her catheter.  (how is that physically possible?  I don’t know but she did.)  the nurse gave me a questioning look.

“We’re not putting that back in.  She can use the toilet.”  I tried to sound reasoned but firm.  I knew it was what Rose would want, and despite the extra demands on the medical staff, of pulled IV’s and possible wet beds, it was important that Rose continue to reclaim control of her life.  And she did.  More than once, three performed the difficult dance of bedside to the in-room toilet and back, 2 IV lines, a central line and a temporary disconnect from the all critical input to the over-bed monitor pulmonary pressure live, amongst poles and held bags, the three moved, Rose and mom and the nurse.  It was worth the risk and the effort.  Claiming control of self, no matter how much assistance is needed, is an important step in demanding a return to health.

Thursday night grew into Friday morning and Rose grew stronger as well.  If health is scored by how many artificial medical lines you have intruding on your body than Rose was starting to win.  First the pulmonary pressure line and then the central line were removed from her upper legs area.  Both insertions were more than several inches long, extending up into her hips.  I wondered how foreign that felt as she had struggled to move.  I watched as each line was removed, three inch lines, extended through her groin up into her hips.  One IV pulled out as she struggled, determined to return to the toilet in the corner of the room.  Even with the help of her mother and a nurse, one IV pole and another drip bag held above her as she shuffle-walked and then twisted, still one line pull tight and then out.  Her arm was washed in her own blood, but still she made it to the bathroom and reclaimed that important affirmation of independence.  Despite her progress, the IV line had to be replaced, a constant physical intrusion of Rose but medically necessary to maintain rapid access to blood ways.  Despite her progress, she was still in the Intensive Care Unit, if emergency access was needed she would have to carry the burden of these artificial pathways connected to her body.  The delicate balance of when an aid became an overwhelming imposition was nearly impossible to discern but it was a very real concern.  Complete recovery was not an absolute, it was a precious narrow possibility.  Her strength was growing but it was limited.  Should it be spent carrying these intrusions or healing her body?  At what point do the risks tip favorably towards recovery?  This is impossibly delicate question that doctors and parents have to answer.  If any bio-medical researcher ever reads this, hear this parents plan; find a less painful, less intrusive way to access children’s blood ways.  Medicine will be truly advanced and modern when puncturing and cutting and stitching are no longer necessary.  I felt like I was holding back the tide of a million possibilities while doing my best to maintain the facade of a supportive, confident parent. 

Rose simply wanted to get better.  Her recovery was a growing awareness that these lines that tied her down had to go.  By the end of the day Friday she had nearly accomplished that, she was down to a single IV.  She took a stroll out of her room and up and down the hall of the PICU with me shadowing with the rolling IV pole.  This was her victory lap; there was a shared joy in every conversation with nurses at the nurses’ desk or with doctors she passed in the hallway. 

A corner had been turned, her claim on health restored; now she had to prepare her body to prevent another atrial flutter episode.  If Rose was aware enough to sense her heart racing and communicate her need as many adults are then medication would not have been necessary.  But because she wasn’t it was necessary to load her body with meds that would prevent her heart from racing and tripping the atrial flutter threshold.  She would spend the weekend in the PICU taking charge of Amiodarone and Enalaphirl along with Laysex and childrens asprin, charging her system and finding stable balance.  The weekend was as relaxed as family time can be in a PICU. 

Sunday night all the new meds had reached a stable level and Rose’s blood system.  Quietly we passed back over a threshold; Rose’s health was no longer critically in need of acute care. We moved out of the PICU to a room on a medical floor to make room for someone more critical.

Monday morning early, Dr Lapek came by to do another echo cardiogram.  Rose’s heart function had improved over the last few days but there was still more valve leakage than had been present before the atrial flutter episode.  It was a concern to be noted; they would need to check it again at her next cardio visit in 6 months.  Later a nurse came by to take out the last IV.  Now, with her system fully charged, she had no more need for it.  She changed into her regular kid play clothes. 

Dr. Leopold came by later in the morning to assess Rose and talk medication schedules.  All the cardiologists project a warm, supportive trust, Dr Leopold exemplifies this.  Confidence grows from this attitude, and lifts us.  I just sat back and listened as Cheryl and Dr. Leopold talked through various medication levels and schedules until they finally worked out a balance with Rose’s school day and home life.  Rose had been on meds before for her first artial flutter incident, now with her busier life we knew it was important to find a medication routine that fit our life schedule to reduce stress on all of us and to minimize the interruptions on Rose’s daily routine.  After many combinations were discussed, the final details were worked out.  Thanks to Dr. Leopold and Cheryl’s patience and perseverance.  The four medications were scheduled into early morning, afternoon and evening doses, no meds at school, no daily trips to the nurse’s office pulling Rose away from the class.  Success.  Dr. Leopold wrote out several prescriptions and handed them to Cheryl.  He asked us to call his office to schedule a follow up appointment.

“Any limitations on her activities?”

“Nope, whatever she can tolerate, Rose is the best judge of that.”

“So when can we get out?”  I asked

“You’re ready to go now.”  Dr. Leopold answered.

My first thought was to look around the room at all the stuff we had managed to accumulate.  We know to borrow one the floors red wagons to help transport ourselves to the front lobby.  Monday to Monday, one week, we had been through so much and now we were ready to start the process of stepping back into our normal lives in the world outside the hospital.

On the short car ride home we quickly discussed and decided to stop by Rose’s School and visit her classroom.  As a practical matter, we wanted to be there to help Rose share her story with her class mates, better to for a reunion this afternoon so Rose can start a regular school day on Tuesday morning.  An emotional matter for the school, a student in the hospital especially in the PICU, leaves teachers and fellow students with a long list of unanswered nightmares.  As an emotional matter for us, there’s a joy in recovery that becomes more joyful when shared.  We were still tired souls in need of healing, we needed to wash ourselves in as much joy as possible.  We walked the quiet halls of a school in session, followed Rose until we stood at her classroom door.  Rose was just tall enough to peer through the bottom of the window, Cheryl and I looked over her.  The class was sitting on the floor, in a semi-circle, around the teacher, Mrs. Micalic, she was sitting in a rocking chair reading a story, but within a second the scene changed; faces turned to us, eyes lit up and young voices started to call Rose’s name, we opened the door and followed Rose into the classroom and her classmates swarmed around her, joyous to see her and full of questions.  Mrs. Micalic, ever ware of possible teaching moments, took the celebration into her classroom. 

“Ok, everyone,” she said with her laugh

“Give Rose a chance here. Rose, why don’t you sit in the rocking chair and everyone else can sit back down, and ask questions.  I’m sure everyone has a lot of questions.”

The class reconvened, Rose in the rocking chair, Mrs. Micalic standing of to the side, and all her classmates trying their best to maintain classroom decorum but bursting to express their joy.  Mrs. Micalic facilitated a brief question and answer session; the questions were very general about hospital and health, Rose’s answers were those of a second grader ready to shrug off the lost week and get back to her life.  Cheryl and I stood back and took the whole scene in.  The information shared was minimal but the process told all involved that Rose was back and all was well. 

The next day, Tuesday, a week since she had entered the emergency room, Rose walked to the bus stop, met her cousins and neighborhood friends and rode off to a regular school day.  I went back to work and Cheryl went back to her home routine.  At ten o’clock , the phone rang and Cheryl answered it.

“This is Mrs. Mick, Rose’s gym teacher.”  So soon, terrible thoughts can flash through your mind but the tone of her voice was slightly confused and uncertain not panicky.

“It’s great to have Rose back at school.”

“Yes,” Cheryl agreed wondering what could be the point of her call.

“Umm, were running the quarter mile in gym today for time.  I just wanted to check with you to see if Rose is OK to run.”

This is where being for Full Inclusion runs loops around a parent’s paranoid fears, thoughts, as a parent, sometimes you just want to hug your child and protect them from any pain that can come there way, but what’s the pain of being left out?  Dr. Leopold’s words came back to Cheryl and she repeated them slowly and mechanically.

“The doctor said that she had no limitations…she can do whatever she can tolerate.”

“Ok, I just wanted to check with all that’s happened.”

“No problem.  Thanks for calling.  Feel free to call anytime if you have any questions.”

Cheryl hung up and called me right at work.  She ran me through her conversations with Mrs. Mick. She sounded a little unsure of herself, like there’s still time to pull back, maybe we should.  I had the same exact reactions; did we really have to face a decision like this so soon?  But the doctor’s advise was clear, whatever she could tolerate.  And there’s only one way to see what you can tolerate, you have to try.  I repeated the doctor’s words to Cheryl, we both needed to hear them.  We agreed to stay the course and nervously said good bye.

Later that afternoon Mrs. Mick called Cheryl back, with good news; not only had Rose run the whole quarter mile, she had dropped her time to 3:20, taking 20 seconds off her first grade time.

Maybe we worried needlessly; maybe we should have been more cautious.  What tipped our decision was following the advice of a doctor we trust combined with our desire to have Rose back and fully engaged in her world.  I doubt anyone would have faulted us for holding Rose back but the point is she didn’t need to be protected from this challenge.  She wanted to be back at school and this was part of school.  She may never be a top competitive runner but most kids in class won’t be.  This was about taking on a challenge and carrying it through, with dignity, to the best of her ability.  This was one small challenge in a series of many that help define the person Rose is becoming.  This is about growing, sharing and bonding with her friends at school.  The challenge shared and met is a satisfying group experience.  These are moments not to be missed.  But away from the track, away form school, there are challenges we would like Rose to miss but we have no choice.  They are going to come when they come and they are scary, more frightening, more lonesome, more everything than any quarter mile run, no cheering crowds, few will understand what she’s done.  I’ve seen Rose face these challenges with determination and grace that would make any parent proud. 

 

 Back On the Soccer Field                               November 2006

 The Saturday after leaving the hospital Rose rejoined her soccer team, the Blue dragons, for their last game of the season. I missed the local CDSC (Connecticut Down Syndrome Congress) Annual Convention to be at this game.  I was the coach but I was going to have the other helper parents cover this game so I could make the convention but after the events of the previous two weeks this game took on a much greater meaning; for Rose to get back into the swing of her life and for me to see her doing just that. As a parent you find your reassurances where you can,  when you need to.

 

Rose started the game in goal wearing yellow for this last game.  This is a team of 1st and 2nd grade boys and girls and generally not too much structure required for who plays which position.  Basically there's a goal keeper and 5 other players on the field in no specific position. The basics are emphasized; have fun, use your dribbling and passing skills and move the ball towards the other team's goal and protect your goal.  The emphasis is definitely on having fun and keeping it instructional. The adults don't emphasize the score although the kids have a sense of 

Rose also started the first game of the year in goal. Just before the start of that game we were huddled on the sidelines going over a few things.  I was holding the goal-keepers yellow shirt and I asked who wanted to start in goal.  Its important, especially at a young age that the kids were confident enough to try different things including the high-profile, high-responsibility job of protecting the goal. 

"I'll do it," Rose's hand shot up.

I started to toss her the yellow shirt.

"But Rose is our worse goalie!" A player yelled out. How he could have possibly known that I had no idea since we had not done anything that even hinted at assessing the different kids goal keeping abilities but he clearly had his opinion of Rose's abilities.

"Ahh, no, we want everyone to get a chance to play goal. We're a team out there. We need to help each other. She'll do fine" While Rose clearly wasn't anywhere near the best player on the team it was important that I emphasized the need for every player to take their spot at center stage in the goal. I knew that if they weren't willing to try at this young age soon self consciousness of age would creep in and they may never get a chance.  Rose taking the dare to volunteer first could set a very helpful precedent for the other players. And one of the high energy alpha boys challenging her could tip the scale in the wrong direction.

"But we need to win!" he argued back with the logic of a second grader.

"She'll be fine." I tossed the yellow goal keeper to Rose. She pulled it on over her blue soccer jersey and we huddled up for the pre-game team cheer.

The starting players took the field, a little unfamiliar with each other and their new surroundings. The other team took the opening kickoff and caught them all flat footed.  One player drove the length of the field and took a World-Cup like shot on the goal hitting the upper far corner. Rose never moved an inch.  About 10 seconds had elapsed.  

In my mind I'm thinking 'Oh, crap!' but I managed to yell out some encouragement.

"OK, Blue Dragons! No Problem! Shake it off! Let's get it back!"

We kicked off now. The play went up and down the field for a few minutes. I could sense that our team really picked up their efforts when the other team got the ball near our goal.  They were doing their best to prevent a repeat of the first goal.  They learned they couldn't leave it all to the goal-keeper, an important lesson for any player.

After a few minutes a player from the other team took a second shot on our goal.  Less World Cup like, more like a second grader.   The ball rolled towards our goal, Rose took a few steps and fell on the ball.  Picked it up and ran up field and tossed it to a teammate.  My heart was soaring but it was just another bounce of the ball for everyone else. And play went on. They each did their best. Sometimes the ball bounced their way, sometimes it didn't. And just about everyone took their chance to play in goal.

 

 

The team cheer after the last game. Rose has her pink winter coat on because she sat out the second half. She had felt tired after playing the first two quarters.  We were trying to play off of what she felt comfortable with and I think this day was a success. But there she was no way she was going to miss the team cheer.

 

Followed by the event I call "the hand-slapping thing."  Another important part of the ritual of the game.

 

And then the end of the year team photo with two of the dads that helped out during the season.  Back row left is Rose's uncle Kenny with his son, Sam, on his left. They live around the corner from us and he goes to the same school.  A few of the other kids are from Rose's school and share the same classroom. Neighborhood school = neighborhood team = neighborhood friends. There's something to that.

Notice all the kids in the front row are in the "Soccer Listening Position".  This was a jewel I learned from one of the coaches clinics.  Instead of telling the kids to stop moving and be quiet when you want their attention I'd call out "Soccer Listening Position." and they'd drop to one knee and rest their chin on their hand. The lesson is give someone something positive to do instead of telling them not to do a negative behavior. (I think even adults would find this call irresistible)

 

 

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